Okay ladys I know this is far from lupus but I was hoping someone has some knowledge of this disease. I was scheduled to have hystorectomy when the biopsy came back as tumid lupus. Pcp told me to put hysto on hold. Well so far this week my bowels have swelled up to the point of not being able to have bm, then after a few days this let up & pardon me, but It was like a goose having bm's. I woke up this morning in agonizing pain, ovaries felt like they would rupture, I do have cysts on them, back pain so miserable I could barely walk. I honestly feel like I am in labor. My question is could this all be endometriosis? I have showed positive for tumid lupus, but who really knows what that means? I am wondering if I could just have a very light form of lupus & it is really endometriosis that is really affecting me. I have noticed most of my episodes are right before & into my periods. Would endo cause hair loss. If anyone has any knowledge of endo I would love to hear how it affected you. I swear I am almost embarassed to call my doc & tell him that after the bowel thing now this! I'll bet he thinks I'm a wreck!

Don't be embarressed to call the doctor about these symptoms. You need to find out whats going on and get some relief.

I had adnomyosis which is endometrosis inside the uterus. My periods were awful. I would hardly bleed(but would spot between periods, had terrible low back pain and it felt like my insides would fall out when I stood up. I lost alot of weight when I had it and at that time didn't have alot to loose.

When I had my hysterectomy I felt so much better. I did get 3 opinions before the surgery though since the only sure way to tell if I had adnomyosis was by removing the uterus and cervix and do a biopsy. All three doctors gave the same dx so I went for it and was so glad.

Hang in there and get more opinions and more answers. Please keep us updated. Take care and rest as much as you can. You are in my thoughts and prayers.

Endometreosis has eluded me, thank goodness, but I remember the pain of cramps so I know endo pain must be excruciating I wouldn't worry about what your doctor thinks. He'll just have more information about you so that he can help you get some relief. Sounds like you really need it. Even though I wasn't having pain, I felt years younger and so much better after my hysterectomy. I'll be thinking about you and hoping the doctor gives you some quick relief.

Hi BHK. I'm sorry you are having so much pain. That sounds terrible. I had endometriosis when I was 26 years old. I lost a little weight but I'm not even convinced that was the cause. Frankly I didn't have a clue anything was wrong. Once in a blue moon I could have what I can only discribe and what felt like a blister POP up inside me. It took my breath away from a breif moment and it would be gone. but I'm talking about maybe once a month that would happen. The only reason I found out about it was because my doctor asked when my last pap was and it had been a long time. That wasn't even why I went to the doctor. Anyway all he had to do was visual exam because it was so bad he could see it without a biopsy. If I had not had the hysterectomy immidiately they only gave me a year to live. So in my case I had no missed periods or cramps or anything to give me a clue. it wasn't until after the surgery they did the biopsy and found it had become cancer in two places. Anyway the problems you are having don't sound anything like my experience but you really need to get to a doctor and see about a pap smear. I know two people who died because they didn't get one until it was to late. One was my grandmother. I'm not really understanding why you were getting the hysterectomy or why your doctor wanted you to waitso I can't say much about that. I just hope you take care and get some answers as soon as possible.

BAbs, Pat & Carol, thanks for responding. Oh to feel younger would be great! I have had problems with my periods for yrs. They suspect I do have endo. I have even seen the specialist who was going to do the hysto. He says I am having pain in the places that endo normally grows in. I guess I am the reason it was put off. When they gave me the tumid lupus dx I freaked out & was scared to have the op for fear if it was lupus the op would throw me into a flare. At the point I am at I feel like I have nothing to lose with the op. I have tried calling doc today to tell him that I want the op this week! He is out today but will be back in tomorrow. I just can't live with this pain anymore.

I've heard how debilitating pain from endo can be! Have you talked to your rheumy about having a hysterectomy? I don't know what to tell you, or what you can do temporarily to help the pain because I've never had endo., but maybe someone else here will know. I'm so sorry you're going through this. Good luck in getting some relief!